The Family Member ME/CFS Prevalence Poll Take II

[Mishe]

I have absolutely no doubt my dad also has ME/CFS and we both became ill at the exact same time in 1995 after we both received Hepatitis B vaccinations. However I had to tick "An immediate family member has mysterious fatigue but has not been diagnosed with ME/CFS" because he has never been officially diagnosed. I'm 99.9% sure he's not been examined by a doctor who has ever diagnosed anyone with ME/CFS so that's no surprise. By the time he came to accept that he too had it, he was already retired and we were (and are still) living somewhere where he would have to travel much farther than he is willing to go to see a doctor who would be willing and competent to diagnose a sure case of ME/CFS. Thankfully, he sent me (with my mom) some years ago, to fly across the country to see a specialist to examine and diagnose me properly.

 

[camas]

I have absolutely no doubt my dad also has ME/CFS and we both became ill at the exact same time in 1995 after we both received Hepatitis B vaccinations.

Welcome to the Forum, Mishe. Sorry to hear that you and your dad developed ME/CFS at the same time. There are several others here who have mentioned falling ill after Hepatitis B vaccinations.

 

[AussieLulu]

My three daughters and myself have all been officially diagnosed with ME/CFS.
I'm sure my mother has it although she has not been diagnosed and her mother before her was similarly unwell for a long time before she died.
I have a nephew with diabetes and twin nephews and a niece with symptoms that to me indicate the strong possiblilty of ME/CFS. All of these are children from different parents who are my siblings. My brother has also been officially diagnosed with ME/CFS.

Apart from my daughters, we all live far apart from each other.
I have no doubt that this illness has a genetic component to it.

 

[taniaaust1]

Update to my family situation.

Now it appears there are FOUR of us who have ME/CFS (on top of the four of us.. my nanna who I didnt include as it isnt CFS... but she has FM).

I met a first cousin today who I hadnt been in contact with for 15 years and just found out she too is on disability for an "unknown" illness (she's only just turned 30).. Neither of us had known the other was sick.

So now its me who is diagnosed (CC CFS or ME symptoms) and two first female cousins (both children of dads brothers) both on disability with "unknown" chronic illness (one definately fits the canadian consensus ME/CFS doc.. the other fits CFS) and my sister who fits CFS too. So it appears this illness can present quite major (meeting the CC CFS) or can present more minor (but will those members at some point get worst).

All of us got issues before well before 30years (youngest was affected at 17) , Im wondering how many other of my first cousins (there are 17 of us.. 15 of us females with me being the oldest) are going to end up with it and disabled due to it.

 

[fingers2022]

Statistically significant result, indicating strong genetic factor, possibly with concommitant infectious factor.

Why don't researchers take this sort of "knowledge" aproach?

 

[Min]

Statistically significant result, indicating strong genetic factor, possibly with concommitant infectious factor.

Why don't researchers take this sort of "knowledge" aproach?

Dr Jonathan Kerr in the UK did find that ME is genetic, but was refused further funding to continue his vital work by the Medical Research Council who chose instead to fund the fraudulent £5 million PACE trial run by psychiatrists (which, as far as I can see, concluded that people who are a bit tired stay the same after they are treated with psychobabble)

 

[Aquila]

This is really interesting my has many of the same symptoms as me and my mum has MS and I often wonder if there is a link between either of them.

 

[whu-1]

Hi guy , assuming that in the general population cfs if running at 3-4 % of population , and significant other means wife/partner , all so running at 3-4 % , in this stew poll , the risk of passing cfs on to my kids is big , but the risk of passing it on to my partner/wife is small , just wanted to cheak im reading it right

Cheers

Btw thanks for the poll

 

[Insomniac]

I have no family with this. Perhaps this poll is skewed and self selecting in that people with family members ill with this are more likely to vote?
I'm just guessing here.
Perhaps it should be sent to each email or wait till a larger number have voted.

 

[SOC]

Hi guy , assuming that in the general population cfs if running at 3-4 % of population , and significant other means wife/partner , all so running at 3-4 % , in this stew poll , the risk of passing cfs on to my kids is big , but the risk of passing it on to my partner/wife is small , just wanted to cheak im reading it right

Cheers

Btw thanks for the poll

Well, we don't have enough info to draw any concrete solutions, but the data we have here suggests that there may be a genetic factor that makes us more susceptible to ME/CFS, so your children may have a higher than average likelihood of contracting ME/CFS.

On the other hand, sexual transmission of an infection seems less likely (based on this poll) because significant others (partnera/spouses) don't seem to have nearly as high a likelihood of developing ME/CFS as blood relatives.

Our poll shows a substantial number of people with no known familial cases, so genetics is probably not all it takes to develop ME/CFS.

 

[Allyson]

I have just found out my younger brother almost certainly has ME; so far undiagnosed still. Like me he thought he had it for years but had trouble getting it diagnosed; he saw a David Suzuki doco on it years ago and identified with that- anyone got the link for that please?
Now it turns out we both have similar symptoms but have been hiding it from each other and others.
Like many he has been covering it up with caffeine and other substance use and "pushing and crashing" for years until his health is now so bad he has to face it.
I am sure my mother and grandmother both had it - both used caffeine all day every day to get around it- and suspect another sister and an uncle likely have it.

Good poll, Cort,thanks; interesting and may become more so as more people have diagnoses confirmed.

 

[MEG]

Both my mother and youngest sister died very young from me/cfs. My youngest son has classic symptoms but has not yet been officially diagnosed.

I was most happy to participate. My greatest hope is that there are answers and treatments, especially for my son.

 

[MEKoan]

I think the weakness in this poll is that people with an affected relative/spouse will be more likely to answer it than those who do not.

 

[taniaaust1]

I think the weakness in this poll is that people with an affected relative/spouse will be more likely to answer it than those who do not.

True.. but the fact that quite a few people have 3-4 family members too with this illness.. shows that something is going on, those kinds of odds of having that many in one family affected isnt likely to be just coincidental and cant be well explained in any way as being so.

 

[Enid]

Update on my original vote - (none). Cousin diagnosed with FM, and brother diagnosed with similar ME condition with autoimmunity now.

 

[Wildcat]

.
Min wrote - "the fraudulent £5 million PACE trial run by psychiatrists (which..... concluded that people who are a bit tired stay the same after they are treated with psychobabble) ..."


.
Well said Min. Very astute.

.

 

[SOC]

I looked at this poll for the first time in a while and got to wondering if there might be a symptom subset difference between PWME with likely familial patterns and those with no other family with ME/CFS (or similar).

Any thoughts? Anyone with the smarts to construct a poll that might actually tease out this information?

 

[taniaaust1]

Hi guy , assuming that in the general population cfs if running at 3-4 % of population , and significant other means wife/partner , all so running at 3-4 % , in this stew poll , the risk of passing cfs on to my kids is big , but the risk of passing it on to my partner/wife is small , just wanted to cheak im reading it right

Cheers

Btw thanks for the poll

One ME/CFS specialist has said that there is a one in four chance of passing it to a child (from his own personal study of his patients)... and yeah.. less chances of passing it to ones partner (thou many do in the beginning stage of the illness..maybe cause the original whatever we get is active then).
So that makes it appear even more likely that genetics also play a big part.

 

[taniaaust1]

I looked at this poll for the first time in a while and got to wondering if there might be a symptom subset difference between PWME with likely familial patterns and those with no other family with ME/CFS (or similar).

Any thoughts? Anyone with the smarts to construct a poll that might actually tease out this information?

My thoughts of that SOC is probably not. Is say that as my sister has developed the illness completely differently to what I did and has a completely different presentation to me thou she could get a CFS diagnoses easily (and now has more symptoms so looking more like a case of actual ME). So from that (and that one of my cousins presents like me with severe ME and the other cousin presents like CFS) I personally think there is no subset which stands out even within families.

eg - my sister has IBS-D .. I get IBS-C
- she gets completely different rash to the rashes to what I get (I get three kinds of rashes but not the one she gets and she doesnt get any of the rashes I get)
- she gets swallowing issues unrelated to a sore throat (as far as I know she dont get sore throats).. where as I get sore throats and dont tend to get swallowing issues.
- She can feel better at times after a bit of exercise (I think it helps her FM part of things).. I certainly never feel any better and only worst after exercise
- I get insomina and so many other symptoms... she doesnt. She doesnt have POTS, OI, postive rombergs or any of the other neurological stuff I do (thou Ive tested her for those things). I had a viral presentation (high temps, swollen glands etc) where as she didnt and still hasnt.

of cause we both do have some things the same.. I had FM too at start of illness which developed after the first year (I dont have FM now thou).. she got FM?? at the start but right away with it, thou im not sure if she does have FM as thou she has severe muscle pain hard massage helps her, where as I couldnt even be touched with it, food issues, severe exhaustion at times, headaches and we both also have heat/cold sensitivity, chemcial sensitivity esp to perfumes, sound sensitivity and brain fog and memory issues but one if one looked at all our symptoms one would think we had completely different things cause our symptom complexes are so different.. my ME strongly has viral presentations, neurological presentations eg myoclonus and tremors etc and the screwed up autonomic system all which she hasnt got.. her ME/CFS main issues are body pain and foods and of cause exhaustion.

I still thou think its very important for them to start studying "subsets" thou even with thinking the same disease can present very different in individuals. What do certain subsets have in common? What abnormalities are connected to what symptoms? which then would make it likely patients would need different treatment routes etc

 

[MeSci]

Whilst no other members of my family have had ME, my father had rheumatoid arthritis, and I believe that the two conditions are very likely to be connected, both having an autoimmune basis. He also later developed Type 2 diabetes - another condition with strong evidence of an autoimmune component in its causation. As treatment for leaky gut has been found to produce improvement for ME patients, and as there is strong evidence that leaky gut can lead to autoimmunity, any familial link may relate to a susceptibility to autoimmune disease via a predisposition to a compromised gut wall, and/or other biological barrier(s).

Here is a scientific paper on how leaky gut can lead to autoimmunity:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886850/